National
Fibromyalgia Awareness Campaign (NFAC)
Please
Contact: NFAC, (714) 921-0150 or by E-Mail at NFAC1@aol.COM
Or RMatallana@aol.com Spread
awareness to your community!
Tired of explaining to others how you feel? Join in on the May 12 Awareness Day activities to help educate others about FMS/CFS and related disorders. Patient advocate Tom Hennessy, Jr., President of RESCIND, Inc., started the awareness day concept as a yearly reminder to the public and to health officials that people like you really do exist despite the invisible nature of your symptoms.
The May 12 Awareness
campaign is designed to minimize the time and energy requirements on your
part. Colorful posters, bookmarks and a "How-To" packet on ways to stir
up publicity in your town are all provided by RESCIND for the cost of postage.
RESCIND,
Inc.
From a post on the wall, March, 2001
For those of you whose doctors are still balking at the idea of Fibromyalgia being a syndrome (it is not considered a disease) or even a legitimate diagnosis, you may want to point out to them that Fibromyalgia has been around in medical books since the 1800's. It has been known by many names through the years: fibrositis, muscular rheumatism, inflammatory hyperplasia, fibroytis, myalgia,and bursitis, gout & pseudo-gout. Many of these names have since been re-assinged to mean only those diseases in which they were first seen. And it needs to be said that many individuals with Fibromyalgia indeed have bursitis, gout as well as rheumatism and arthritis.
In the days of the medicine wagons that sold elixirs "For whatever ails ya!" claimed to relieve many of the symptoms of fibromyalgia (usually because they contained a high % of alchohol).
It has only been in the recent past that Fibromyalgia has been challanged as a 'real' syndrome. Due mostly because of ignorance, lack of adequate testing and no one single test to diagnose it, that it has been considered a psychosomatic illness or the 'new' rage in illnesses, causing most practitionors to not even consider it. Of course we all know what that causes in terms of money, self-respect, and not least of all our health itself. The treatments are so varied, so unreliable, that we are often accused of hypochondrism, drug abuse, laziness and labled as un-willing to participate in our own well-being.
We need to get the information to our doctors. Obviously, the best way to do this is by giving them scientfic facts. These facts are available--we just need to dig a little harder to get them--from The Arthitis Foundation, Rhuematologists, Fibromyalgia networks, Physical and Pain therapists, Chiropractors who specialize in Fibromyalgia and from the Web (making sure of course, that the info is legitimate!). (NB: many of the links on this page, the Information page and the Support page have important, pertinent information.)
I have been blessed with a rhuematologist who specializes in Fibro
-- he gave me the above information. We still do the trial and error approach
to treatment, but at least I know he isn't questioning the validity of
my complaints! He also told me that a lot of states have laws governing
the use of narcotics for chronic pain and so if you are having trouble
with your doctor prescribing meds, you may need to be very blunt and ask
why they don't give you a medicine that you feel you need. Whatever you
do, don't give up! Find a caregiver who actually cares and swamp them with
information and questions! Then pass it on to those of us on the Wall!
Be kind to yourself even if no one else is! Rest well! - Marie
CINDA:
What if you want to do something, but you are not sure what or how?
CINDA's
'How to be Active' page will help with both
the concept and follow-through on whatever type of project that interests
you... from fundraisers to letter writing campaigns, nothing is too big
or too small for them to be involved.
CSSA:
Nancy Solo is Founder and President of The Chronic Syndrome Support Assn.,
Inc. (CSSA), a 501(c)3 non-profit corporation dedicated to furthering awareness
of chronic syndromes. CSSA publishes a free pamphlet for public distribution. The Chronic Syndrome
Support Association, Inc. 801 Riverside Drive, Lumberton, NC 28358-4625
.USA (910) 272-0590 email: nsolo@cssa-inc.org
website:http://www.cssa-inc.org
Their pamphlet is great
for passing out to friends, family, perhaps in local Drs. offices and libraries.
American
Society for Action on Pain (A.S.A.P.)
ADA
(American's with Disabilities Act) A description, in laymen's
terms, of reasonable accommodation, perceived disability and more from
a law firm.
http://www.disabilityclaims.com. Disabilityclaims.com was created to serve as a resource for American disability legal issues. It attempts to address the legal concerns of disabled individuals. It also provides many common sense do’s and don’ts in the disability benefit application process.
The National
Foundation for the Treatment Of Pain (N.F.T.P.) A non profit corporation dedicated
to securing social justice for pain patients, their families and their treating physicians.
A group of long
time sufferers have decided to form an advocacy project called Sudden
Onset and we hereby announce that we are circulating a petition which
arises from the observation that BOTH the Centers For Disease Control and
National Institutes Of Health have responded with indifference to the emergence
of CFS and FMS. Our needs have been neglected and our trust
betrayed by the institutions of government charged with protecting them.
We are asking that all people with the illness as well as family or friends,
and all CFS or FMS advocates, regardless of affiliation, support this petition.
We have offered it to all of the National Groups and indicated that we
can format it so that they can collect it themselves. We are also offering
it to all local groups and directly to to anyone who would like a copy.
Landscape formatted
petitions can be obtained by e-mailing me your regular mailing address
Condy Eckerle
mailto:condy@earthlink.net
and I will drop them in the mail. You can download and print an on-line
version of the petition at http://www.co-cure.org/gao.htm.
Due to differences in the way each browser handles putting print onto a
page there may be irregularities in your form. If so, send mail to me describing
any difficulties, or request a written copy from me. Condy Eckerle mailto:condy@EARTHLINK.NET
Americans: find
your congressman.
A
Fibromyalgia action and advocacy site.
Justice
For All JFA E-mail Network. To defend and advance disability
rights and programs in the 104th Congress. One JFA goal is to work with
national and state organizations of people with disabilities to get the
word from Washington D.C. out to the grassroots.
AMA advocacy. A site for those of us who want to find out what
is going on in the AMA. This page is slow to load. you may want to try the AMA policy page.
From Just Ole
Liz
Alternative
Medicines and Legislative forums.
Mass Mailing
Center for Disease
Control-Attn: Dr. David Satcher 1600 Clifton Rd. N.E. Atlanta, GA 30333
US Dept. Health
and Human Serv. 200 Independence Ave. S.W. Washington, DC 20201
US Social Security
Admn. 820 1st St. N.E. Washington, DC 20002-4243
Oprah Winfrey
Show Harpo Productions P.O. Box 909715 Chicago, Ill. 60607
Nightline- WABC
TV C/O Karen DeWitt 47 W. 66th ST, New York, NY 10023
Federal News
Service 620 National Press Bldg. Washington, DC 20045
CBS 524 W. 57th
ST. New York, NY 10019
CNBC 2200 Fletcher
Ave, Fort Lee, NJ 07024
Arthritis Today,
Arth. Found. Inc. 1330 W. Peachtree St. Atlanta, GA 30309 December/97
Government:
First.Lady@whitehouse.gov,
President@whitehouse.gov
and
Vice.President@whitehouse.gov
.
"Welcome to the
White House" can be accessed at: http://www.whitehouse.gov
Electronic access
to bills before Congress (and other legislative data) http://www.house.gov
--
White House documents
& publications are available by email. To receive instructions, send
a message to the following address: publications@whitehouse.gov.
In the body of your message, type "Send Info" (without quotes); no other
text should be included (including message headers or signature lines (.sig
files)
Sheri
Abrams: Attorney in the Washington D.C, Virginia, Maryland area who
specializes in SSI and SSDI cases for those with fibromyalgia.
Fibromylagia Victim Wins Suit Against Disability Insurance Company
SEATTLE--(BUSINESS WIRE)--Nov. 30, 1999--Seattle attorney Steven Krafchick announced victory today on behalf of a disabled woman whose disability insurance company, Paul Revere, wrongly cut off her benefits.
The 52 year
old woman was an executive secretary for Noevir Corporation in California,
when she was diagnosed with fibromylagia and chronic fatigue syndrome in
1988. In May of 1992, she was no longer able to work,
and began
collecting disability benefits from Paul Revere Insurance Corporation.
39 months later, Paul Revere required her to see an ``independent'' examiner,
not a MD but rather a neuro-psychologist, hired
by them. That
psychologist did not consult with longtime doctors who had been treating
the woman, nor did Paul Revere provide the examiner with the woman's complete
medical file. He made no psychological diagnosis,
and was unable
to determine what physical condition prevented Linda from working, as that
determination was outside the scope of his expertise.
Paul Revere referred her medical records to other internal doctors (physicians working for the insurance company), who concluded without further examination -- and without consulting MD's who had been treating her for years -- that the woman suffered from a mental disorder.
The woman's policy required Paul Revere to pay for physical disabilities and illnesses until the insured is 65 years old. However, those who are diagnosed with ``psychiatric disorders'' are only eligible to receive benefits for up to two years. Based on their altered diagnosis, Paul Revere cut off her benefits.
The judgment rendered by Judge Robert Lasnik, Federal District Court in Seattle, orders Paul Revere to pay all back benefits and re-instate her contract benefits. According to attorney Krafchick, ``Paul Revere never should have done this to her. My client and her employer paid their premiums. Paul Revere should have honored that contract.''
``This is the
plight that I see with so many of my fibromylagia and chronic fatigues
syndrome clients. Disability insurance companies target them, and that's
wrong,'' Krafchick continued. ``A growing industry of doctors hired by
insurance companies help insurance companies justify their ways to avoid
paying premiums to their customers. It's a consumer nightmare.''
The Wall
FMPSC home page
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